Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Thursday, September 12, 2013

We are live and we hope to reach many more people now! To celebrate and help spread the word, I've created a coupon code for our Etsy Shop.

Visit our Etsy Shop and check out all the NEW Hugs for Hailey necklaces just in time for the holidays and new items from our shop staff, HRG Designs. HRG Designs has created new and one of a kind items JUST for Hailey's Esty shop!! Thanks HRG Designs! We appreciate you helping Hailey!

Use Coupon Code DOTCOM and get 20% off your order until 9/14 PLEASE SHARE!!

Wednesday, September 11, 2013

With Hailey wanting to use those legs of hers to her fullest ability, we've given her the walker we got from the hospital back in January 2012. (The second time she lost her ability to walk) She didn't exactly remember how to use it. The first thing she did after we told her to hold her walker to walk was, pick up the walker in both hands and walk while literally HOLDING her walker. Silly child!

I think she's got the hang of it now. She also has a walker she uses at school, and she really gets around. She isn't totally dependent on the walker, she still lets go and tries to walk on her own. When she is tired and still insists on walking we put the walker by her so she can use it.

With this new "freedom" comes new anxiety for me. If I could wrap Hailey in bubble wrap so that when she fell down she wouldn't get hurt I would. I walk behind her with my arms in the "Ready to Catch You" position. Sometimes she doesn't want to hold my hand and she wants to do it herself. Which I'm glad for the sense of determination and will but, I can't let her go on her own just yet. I don't even remember what is what like when I didn't have to watch her like a hawk.

I remember when she was a tiny baby and we didn't know of this scary Leukodystrophy word, and I would think to myself while looking at her perfect face, "How am I going to let you drive a car all by yourself one day?" "How am I going to let you go off to college and not see you every single day?" "How am I going to let you live your own life and possibly only see you on holidays or only a few times a year?" Now that those things might not happen I find myself thinking the opposite. I want her to be able to live her life and drive a car by herself, go to college, and be able for her to live her own life.

I have to be able to let her do things on her own. If she wants a drink or snack I have to be able to say, "let's go get it." instead of "let me get it for you." If she says she wants a book I have to allow her to get to the walker and go pick a book from the bookshelf instead of me going and getting it for her. She wants to, and I kind of hold her back. Josh is the opposite. He gives her the independence she wants. She ALWAYS wants to help and even though it'll take him 10 times longer to accomplish a simple 2 minute task he lets her help. You can always hear, "I'll help you!" from Hailey.

So even though I can't just sit there and watch Hailey if she's going to fall, I allow her to make those mistakes and missteps and stumble. I show her why what she planned didn't work. We tell her when she falls that she'll be alright and to try again. She's great at crawling and with there being less of the chance of getting hurt if she does it she'd rather walk. We've got to work on those muscles and coordination. I keep thinking if it was me and I was lacking coordination, depth perception, and had muscle weakness and spasms I'd stick to what works and crawl. That's not Hailey. She doesn't want the easy way. The hard way is Hailey's way. Learning to walk again after a year is no easy task for anyone but, if you have the will you can get farther then you think. Just look at Hailey.

Friday, September 6, 2013

The first day, even week, at school was super exciting for Hailey and super stressfull for me. School was starting on a Monday and teachers weren't at school until the Wednesday before and I know they had things to do and get in order and were going to be busy. I left a message for Hailey's teacher and was able to set up a time to go and meet the teacher. My nerves were all tangled up. It was going to be a new teacher, a new school, new nurse, new bus driver and lots of unknowns.

When I went to the school and met Hailey's teacher I was able to breath a huge sign of relief. Hailey's teacher was interested in Hailey and listened to all my questions and concerns. She even invited us to an open house so that I could bring in Hailey and have them meet. She asked if there were special treats that Hailey likes, if Hailey get tired fast. Lots of questions that I didn't mind answering.

There were a lot of kinks that came about that we all had to work on. In kindergarten the kids go all day. That means Hailey will need to have her feed at school and also medication. That means the nurse will have to come in and hook Hailey up and then run the feed machine. Since school nurses are assigned multiple schools, Hailey would have multiple nurses come in to do the feeds everyday that Hailey is at school. So I made sure to be there to show them how to do the feeds and medication. I think that was the hardest part of Hailey going to school. You just have to trust and have faith that your child will be fed on time and that the correct amount of medication is given. You're not there to watch and make sure. Hailey has no idea of what and how much she needs and I've been her primary care taker for so long. You just have to trust. You have to build a relationship and an open line of communication between you and the persons caring for your child.

Hailey wants to eat lunch with her friends. There's another problem. Hailey has a feed at school so she IS already fed by the time lunch rolls around. Since Hailey isn't able to pick up a full sized burrito and eat it she would need someone to cut up her food. The school nurse can submit paperwork to request your child's food be chopped or pureed if it's a medical necessity. Did you know that? I didn't.

School lunches aren't cheap. It adds up and quick, and maybe more then half the time Hailey won't eat it all. When you apply for a free or reduced lunch they just ask for your income and how many family members live at the house. They don't ask how much you are spending every month on treatments and medications that aren't covered by insurance, or how much you pay in hotel rooms and gas to take your child to Utah for a simple Dr. appointment that you can't obtain in the state you live in. No medical information at all. Kind of unfair. I spoke to the principal about this issue and we are working together to see what can be done about that.

The previous school Hailey attended had the WORST "customer service" front desk staff ever!! You could walk in and no one would acknowledge you. I never met or even seen the principal there once. The principal had went on medical leave right at the beginning of the year, then had maternity leave and then Hailey had surgery and then the school year was over. She never met or even knew anything about Hailey (That I was made aware of). I don't think she cared. I don't think a large majority of the staff cared even if they did know. The school nurse was incredible and I built a relationship with her. The assistant principal knew of Hailey because she was in on every single IEP we had, but she never offered help to us or asked us if we ever needed anything. There was one time when Josh called the school because of a bus ADA issue and they were quick to help then. I was scared thinking, this is how it is at all schools. When Hailey changed schools for summer it was kind of the same thing. I felt like people were just there to do their job and go. I knew with Hailey being at school all day I was going to be very involved and I wanted to again build a relationship. I wanted everyone to KNOW me and know Hailey.

When I went to the school to register Hailey I was shocked at how friendly, attentive and helpful the staff at Hailey's new school were! They acknowledged me right away. They kind of knew of me from calling and leaving messages previously. They asked about Hailey and I gave out some cards to direct them to the blog and the facebook page. Everyday that I came in they'd greet me and ask how I was. That never happened ONCE before at Hailey's other school! It happened 4 days in a row at the new school!

I had asked about who Hailey's aide was going to be and had discovered that Hailey wouldn't get a 1:1 aide. That she would get floaters of whoever was available. I didn't like this. I didn't want to train one person how to care for Hailey and then come back to do it all over again when another floater came along. I thought the mess of last year and fighting to get Hailey an aide was behind me. Last year I had to attend school as Hailey's aid and collect data with a click counter and then after weeks and weeks they said that Hailey would have an aide, and we loved that aide, and she cared for Hailey and she went to summer school with us. Imagine how shocked I was when the Instructional Coordinator tells me that Hailey was never assigned a 1 on 1 aide. I can picture myself scrunching my eyebrows and shaking my head, "ah what?"It honestly doesn't make sense to me. I have a child who has special needs, who is medically fragile, in a wheelchair, uses diapers, has orthotics and would need help to wipe her nose, hold a pencil, transistion from a wheelchair to a regular chair and would need to be supervised while in a chair. Hailey needs to have someone there in case she unbuckles her seatbelt on her wheelchair and trys to get out. She needs someone to help her while at lunch to help get her food, feed her, wipe her mouth, and monitor how much she eats. Hailey needs assistance if she's on the floor playing and other kids are acting out and push her over or step on her or take something away from her because she can't defend herself. How can this Instructional Coordinator deny Hailey a 1:1 at school? I was told Hailey would have constant supervision at all times the only difference between that and a 1:1 aid is that the 1:1 is always the same person. One thing about Hailey's diease it that nothing is consistent. You don't know what one day brings that won't be there or will be worse the next. Hailey needs to build trust with people who are consistently in her life. I don't mind her meeting new people but I want someone who is pretty much taking my place while Hailey is at school. They need to know her so well that they can tell when something isn't right. Again, how does this not make sense to anyone but me? Am I nuts?

After Hailey's surgery, when it became time to discuss Hailey going back to school you read about all these laws that are in place for a disabled child to be able to attend school. With those laws in place we are still fighting. I have read about Least Restrictive Environment and my sister reminded me of this recently as she has dealt with similar issues. Here is the definition of LRE taken from Wikipedia:

"Least restrictive environment" (LRE) means that a student who has a disability should have the opportunity to be educated with non-disabled peers, to the greatest extent appropriate. They should have access to the general education curriculum, or any other program that non-disabled peers would be able to access. The student should be provided with supplementary aids and services necessary to achieve educational goals if placed in a setting with non-disabled peers. Academically, a resource room may be available within the school for specialized instruction, with typically no more than two hours per day of services for a student with learning disabilities.[1]Should the nature or severity of his or her disability prevent the student from achieving these goals in a regular education setting, then the student would be placed in a more restrictive environment, such as a special school, classroom within the current school, or a hospital program. Generally, the less opportunity a student has to interact and learn with non-disabled peers, the more the placement is considered to be restricted.

Just reading the highlighted sentence I would think Hailey getting an aid would be a done deal but I was told no. I think I do pretty well at speaking up for Hailey and getting her what she needs, but after this meeting I was in tears. I'm her parent. I'm her advocate. No one will fight for her but ME and I feel as if I am failing. I felt defeated. I wanted someone to tell me how to go about getting what I feel Hailey needs. What more does Hailey not have to be able to do for herself to get an aide that is in the way of this happening? I went home in shock and in tears. I know that the instructional coordinator can only do what she is told or allowed to do. I just think more can be done. I also think she should want to help me get what Hailey obviously needs.

The next day the principal asked to speak with me. She saw how distraught I was with the meeting yesterday. She wanted to help, she said we will work on this together. While Hailey is at school she WILL be safe and she will get an education and she will have fun. I was so happy to hear that she wanted to help Hailey. The principal and assistant principal tell me they check on Hailey everyday. I was happy to hear this. Hailey is at a school where people are going to care and offer to help where they can. This means SO much to me, us.

Another thing that happens in all day kindergarten is Library, Music, Art and PE. Well one more bump. Hailey can't do PE and PE is 2 days a week. Hailey will be attending either Music or Art in place of PE . When Hailey came home last week she told me "I have Paint at school!"

Hailey talks about her backpack all the time. Her lunch box holds her "refrigerated" medication and a few small snacks. Hailey takes the bus on a 20 minute commute. We've had to change bedtime so she gets enough rest to handle a full day of school. We try to have Hailey ready for bed by 7pm so we can have her up by 7 am. She is still getting use to the chaos of our day. Just because school is done doesn't mean we don't also have appointments ALL week. We still have Speech, Occupational and Physical therapy that we need to go to. We need to see our NUCCA Dr.s. Our day is gone by the time we get home and sometimes I think we are both cranky and ready for bed by 7. Poor Josh only gets about a 1/2 hour with Hailey before it's time for her to go to sleep. Weekends are his. He'll pack up Hailey and her feed and head to the mall to walk around and spend time together. She loves it, but Hailey only wants to go into "Girl" stores. She's like me, not a huge fan of Finish Line or Foot Locker or Dick's Sporting Goods. LOL!

So Hailey had a great first week, I had a rough first week that ended up comforting in the end. I met with the teacher, teacher's aide, Hailey's Aide (even thought they call her a floater) the front desk staff, the Physical, Occupational and speech therapist, the school counselor, the assistant principal, and the principal among others. Everyone that works at this school is great. I don't know what this school year will hold in regards to Hailey's health but I know that she'll be safe and around people who care for her. That's what I want for her.

Monday, September 2, 2013

I had this post planned for a long time, but the title has changed at least 5 times. We are coming up on a lot of anniversaries for Hailey. August 6th was 2 years since our first "true" signs of Leukodystrophy and Hailey's first admittance into the hospital with a misdiagnosis. July was 1 year that we were given her diagnosis, October will be 1 year of have her g-tube placed. Then lastly with tears of happiness I can change this sentence:

September would have been 1 year that Hailey has not walked on her own.

To this sentence:

It took Hailey 1 year to be able to regain her ability to take steps on her own!!!

She did it!! We watched her take steps with our jaws on the floor! She has taken as many as 6 steps on her own! We were told that it had been so long since she had been able to walk, and since the white matter that surrounds her central nervous system was basically gone, the chances of her being able to walk again was extremely low. I have to admit that I had my doubts that Hailey would ever take independent steps on her own. I accepted that she would be confined to a wheelchair. When I think back to all the other times she had an episode and lost her ability to do things she always fought and came back. I feel horrible for not thinking or believing that she would fight again. She has more will then any person I know. Leukodystrophy is a heartbreaking and horrible disease that can appear to be more powerful then a human being is capable of handling. It comes in so many forms and has so many unknowns. When someone tells me that they can't imagine having their child go through this I think back to that movie Lorenzo's Oil. (If you choose to watch this movie have boxes of tissue handy) That child had ALD which is a form of Leukodystrophy and Dr.s and family and friends told that child's parents to just let him go in peace. The parents fought and kept fighting even when they had no help & no where to turn. As a family they didn't give up.

Josh and I will never give up on Hailey and I know I will NEVER doubt her strength again.

Hailey wants to walk everywhere we go. She likes to hold my hand and take her steps. Most times it's not feasible, like when we go to a mall, for her to walk the whole time. When we go to therapy we park close to the door and I will ask her if she needs her chair. She will always say, "no, I walk." So I help her walk. When we see our NUCCA it's the same thing, "I walk." Now that she is at school her teacher and her aide allow her to bare weight on her legs and hold hands and walk throughout the classroom. We went to Utah last week to see the Rehab doctor and based on Hailey's last exam they planned on giving Hailey botox injections. When we got there and showed the Dr. that Hailey was taking independent steps she asked if she could record it to show the neurologist in Salt Lake. She had never seen Hailey vertical before besides when Hailey was in the stander. Even though there were still some issues with Hailey hyperextending her right leg and having her left foot turned out she did NOT end up getting the injections.

Now I don't want to be one of those parents who take this disease for granted. I know what it is capable of. I read about it everyday. If there comes a time when another episode hits and she can't take these steps again I won't feel like a depressed sad puddle on the floor, like I usually do. I will help Hailey work to get back to where she was. If Hailey chooses that she's not able to get there again, I will accept that. I will also be happy for these moments that happen where she can be out of her wheelchair and hold my hand to take steps.

Sunday, September 1, 2013

3 weeks ago I received an email from the Make-A-Wish foundation inviting us to attend Make a Wish night with the Las Vegas 51's baseball team. We've never taken Hailey to a baseball game but we both thought it would be something really fun. We also want to try and participate when Make a Wish has events so that we can meet other wish kids and their families.

The 51's invited the kids that attended to go out onto the field with one of the players from the team. Each child got a baseball to be autographed. Hailey wanted to walk so badly with the other kids that they also let Josh out with Hailey so that he could hold her up when standing.

I LOVE this picture below! It's awesome. Cashman Field took pictures for us parents that were watching in the stands. I talked to some parents as we all watched out special children out on the field with smiles on their faces.

Hailey was very excited to get her ball signed by number 24. She showed everyone she passed her baseball.

We had such a great time at this game but had to cut it short. Hailey wanted to stand so much she was so exhausted only 4 innings in. It was time for bed. There were only 4 more home games left in the season and we really wanted to take Hailey at least one more time because she enjoyed it so much. One of our followers on Facebook invited us to attend another game one week later. Hailey talked about going all day. She wanted to see "my guy" the baseball player that signed her ball a week earlier.

When we arrived at the field there were a few surprises in store for Hailey. She got another ball and this time signed by the WHOLE team, she got a broken bat, and was able to sit in the front row! What a happy little girl we had. Again, we had to show everyone our baseball!

Who knew a night of baseball could put such a smile on a little girls face? She must take after me, I was one of the official score keepers for my high school baseball team for several years, and Josh and I always went to games before Hailey came along.

What's a trip to the baseball game without a Hawaiian shaved ice? It was a little warm and sticky out so we all shared a shaved ice. One side pink for Hailey, and green for Josh.

Hailey really wanted to use those legs to get as close as she could. She watched the players and cheered for both teams. She loved the music that played, the mini games in between innings, trying to catch t-shirts and fly balls that flew through the air, and the occasional Cosmo the mascot walk by.

Thank you to Make a Wish, the Dwyer Family, and the 51's for allowing us to have more memories with Hailey. We all really had SO much fun! The staff was great, the game was great and the new friends and memories we made are so much appreciated. THANK YOU!!!!